Relevant Ethical Considerations Research Articles

Personalized genetic testing as a tool for integrating ethics instruction into biology courses.

Personalized genetic testing (PGT) has been used by some educational institutions as a pedagogical tool for teaching human genetics. While work has been done that examines the potential for PGT to improve students’ interest and understanding of the science involved in genetic testing, there has been less dialogue about how this method might be useful for integrating ethical and societal issues surrounding genetic testing into classroom discussions. Citing the importance of integrating ethics into the biology classroom, we argue that PGT can be an effective educational tool for integrating ethics and science education, and discuss relevant ethical considerations for instructors using this approach.

Willingness of the local health department workforce to respond to infectious disease events: empirical, ethical, and legal considerations.

According to the Institute of Medicine, the local health department workforce is at the hub of the public health emergency preparedness system. A growing body of research has pointed to troubling attitudinal gaps among local health department workers, a vital response cohort, regarding willingness to respond to emergent infectious disease threats, ranging from naturally occurring pandemics to bioterrorism events. A summary of relevant literature on the empirical evidence, ethical norms, and legal standards applicable to the willingness of public health professionals to respond to an infectious disease emergency is presented. Recommendations are proposed for future work to be done to bring the relevant empirical, ethical, and legal considerations together to develop practical guidance for the local response to infectious disease emergencies.

Health research involving First Nations, Inuit and Métis children and their communities

Canadian and international guidelines address the ethical conduct of health research in general and the issues affecting Indigenous populations in particular. This statement summarizes, for clinicians and researchers, relevant ethical and practical considerations for health research involving Aboriginal children and youth. While not intended to duplicate findings arising from lengthy collaborative processes, it does highlight 'wise practices' that have successfully generated knowledge relevant to, respectful of and useful for Aboriginal children, youth and their communities. Further research on current health issues and inequities should lead to practical, effective and culturally relevant applications. Expanding our knowledge of ways to address the health disparities facing Canada's Aboriginal children and youth can inform health policy and the provision of services. Community-based participatory research is proposed as a means to achieve this goal.

Assessing Decision-Making Capacity: A Primer for the Development of Hospital Practice Guidelines

Decision making capacity (DMC) is a fundamental concept grounding the principle of respect for autonomy and the practice of obtaining informed consent. DMC must be determined and documented every time a patient undergoes a hospital procedure and for routine care when there is reason to believe decision making ability is compromised. In this paper we explore a path toward ethically informed development and implementation of a hospital policy related to DMC assessment. We begin with a review of the context of DMC assessment before discussing some considerations relevant to policy creation by healthcare ethics committees. The discussion concludes in a presentation of a typology of capacity assessment policies, which draws upon a sampling of currently used hospital policies to illustrate relevant ethical considerations.

Setting Up Spaces for Collaboration in Industry Between Researchers from the Natural and Social Sciences

Policy makers call upon researchers from the natural and social sciences to collaborate for the responsible development and deployment of innovations. Collaborations are projected to enhance both the technical quality of innovations, and the extent to which relevant social and ethical considerations are integrated into their development. This could make these innovations more socially robust and responsible, particularly in new and emerging scientific and technological fields, such as synthetic biology and nanotechnology. Some researchers from both fields have embarked on collaborative research activities, using various Technology Assessment approaches and Socio-Technical Integration Research activities such as Midstream Modulation. Still, practical experience of collaborations in industry is limited, while much may be expected from industry in terms of socially responsible innovation development. Experience in and guidelines on how to set up and manage such collaborations are not easily available. Having carried out various collaborative research activities in industry ourselves, we aim to share in this paper our experiences in setting up and working in such collaborations. We highlight the possibilities and boundaries in setting up and managing collaborations, and discuss how we have experienced the emergence of 'collaborative spaces.' Hopefully our findings can facilitate and encourage others to set up collaborative research endeavours.

Forensic Assessments of Juveniles

This article provides a discussion of assessments of youth relevant to forensic decisions. The latter include decisions relating to legal processing within the judicial system and the treatment of youth following adjudication. The article begins with a discussion of general issues relating to forensic assessments and a review of the different objectives of forensic assessments. This is followed by a review of relevant ethical and legal considerations. Examples of specific assessment instruments and procedures are presented.

Paediatricians, social media and blogs: Ethical considerations

The use of blogs, Facebook and similar social networking sites is rapidly expanding and, when compared with e-mail, may be having a significantly different impact on the traditional doctor-patient relationship. Characteristics specific to these online platforms have major implications for professional relationships, including the 'Facebook effect' (the relative permanence of postings) and the 'online disinhibition effect'. The present practice point illustrates relevant ethical considerations and provides guidance to paediatricians and others concerning the prudent professional and personal use of social networking media.

Should we perform deceased donor liver transplantation after living donor liver transplantation has failed?

2011 AASLD.Received February 16, 2011; accepted April 27, 2011.By asking whether we should perform deceased donorliver transplantation (DDLT) after living donor livertransplantation (LDLT) has failed, we appear to bequestioning the generally accepted current practice ofretransplantation for transplant failure. However, wewill also consider in this analysis that LDLT may havebeen performed for patients whose tumors werebeyond the local criteria for listing or increased prior-ity on the deceased donor (DD) wait list (ie, thepatients were not eligible for DDLT originally). Toarrive at a recommendation, we will analyze the out-comes and ethical implications of retransplantationby considering the following 4 questions:1. Should we perform DDLT after the failure ofDDLT?2. Should we perform DDLT after the failure ofLDLT in a patient without hepatocellular carci-noma (HCC)?3. Should we perform DDLT after the failure ofLDLT in a patient with HCC who fulfills the localcriteria for listing and increased priority on thewait list?4. Should we perform DDLT after the failure ofLDLT in a patient with HCC who does not fulfillthe local criteria for listing or increased priorityon the wait list (ie, the patient failed to meet thecriteria for DDLT originally)?With questions 1 to 3, we will consider the ethicalfoundation for the current practice of retransplanta-tion for graft failure, and this discussion will serve asthe basis for question 4, which is more controversial.

Mind sharpeners for scientists: The EQUATOR Network

Scientific reports should be orderly, clear, and unambiguous. Clarity is even more important for health technology assessments (HTAs), which aim at supplying reliable and up-to-date evidence on the effectiveness, safety, and cost of healthcare interventions. Increasingly assessments also provide information about the effects of technologies on organization of care, as well as relevant legal, social, and ethical considerations.

Ethical key issues and fundamental rights in paediatric research

This article is aimed at describing the methodology of "ethical reasoning" that finally led TEDDYNoE (Task-force in Europe for Drug Development for the Young) to propose the integration of international human rights law to develop coherent and exhaustive ethical recommendations on paediatric research at a European level. A large number of ethical guidelines and texts of varying legal force existing in the field of clinical research and in particular related to paediatrics are analysed. Differences and non-coordinated implementation are pointed out. Differences, tensions or outright contradictions among the provisions of these texts can generate confusion leading to the adoption of different ethical standards across Europe. In this context, the real challenge is to ensure that each child involved in a clinical trial in the EU territory may rely directly on the same principles and rights. Taking international human rights law as the main starting point to develop a coherent framework for paediatric research that incorporates all the relevant ethical considerations and existing guidelines is a way of achieving this objective. The implementation, at national and local level, of the "European Ethical Recommendations" (Eudralex 2008 vol. 10), based on international human rights law, seems to be the next step in facilitating a coordinated approach to the application of the Directive 2001/20/EC, as well as developing quality and ethically sound paediatric research.

Lessons from the response to A H1N1 influenza, 2009, India: ethics in pandemic planning

After the Severe Acute Respiratory Syndrome (SARS) experience in 2003, ethics has found a place in discourses on pandemic planning and public health. It is no longer enough to merely have action strategies in a pandemic plan; both research literature and the World Health Organization recommend that one has to further ensure that the outcome of such action is fair to all concerned, and is in conformity with relevant ethical values and considerations. India's pandemic plan suffers from a glaring omission in this aspect. Taking strategies and responses during the 2009 A H1N1 outbreak in India as instances, this paper identifies the lessons to be learnt from this experience and argues that these raise ethical issues ingrained in pandemic planning which must be addressed. It ends with the suggestion that the Indian health authorities should add an ethical dimension to the national pandemic plan, as has been recommended by the World Health Organization and by post-SARS studies.

Focus on Patient Management: Responsibly Managing Psychiatric Inpatient Refusal of Medical or Surgical Diagnostic Work-Up

This column uses the tools of normative ethics-analysis and argument-to provide a reasoned account of and to identify ethically justified responses by the psychiatrist to psychiatric inpatients' refusal of medical or surgical diagnostic work-up. There are three relevant ethical considerations when psychiatric inpatients refuse medical or surgical diagnostic tests: balancing autonomy with beneficence, surrogate decision making and confidentiality, and managing strong feelings. Assisted decision making and assent are key management strategies for promoting patients' autonomy and for protecting against adverse consequences of decision making.

Conducting ethical clinical trials for L. donovani in the Bihar region of India

Visceral leishmaniasis is a severe disease that disproportionally afflicts the Bihar state in India with 40% of the worldwide disease burden. Drug resistance, poor adherence, extreme poverty, malnutrition and certain living conditions have made control and treatment of the disease difficult. There is a great need for new drugs and control programs to reduce the disease burden of this debilitating and potentially fatal disease. Drug discovery research on leishmaniasis is being conducted in the USA and this raises issues concerning the ethical conduct of international clinical trials. Ethical principles dictate that the Bihari who need these drugs should be included in clinical trials. Additional safeguards for the ethical conduct of clinical trials on developing countries by developed countries have been formulated elsewhere. These include collaborative partnership, social value, scientific validity, fair selection of study population, favorable risk-benefit ratio, independent review, informed consent, and respect for recruited participants and study communities. These principles are applied to the Bihari context, and issues of ancillary care and post-trial access are also addressed. The socio-cultural context of the region is discussed in order to give researchers the tools to obtain meaningful informed consent. A description of the Bihari context and relevant ethical considerations should facilitate the design and conduct of ethical clinical trials for L. donovani.

DISYUNTIVAS EN LAS CONCEPCIONES SOBRE AUTONOMÍA Y BENEFICENCIA QUE AFECTAN LA TERAPÉUTICA DEL INTENTO SUICIDA

El objetivo del trabajo es conocer las disyuntivas entre los principios de beneficencia y autonomía, que se presentan en la relación médico-paciente, durante la terapéutica del intento de suicidio.La investigación se realizó en dos hospitales psiquiátricos de la Ciudad de México. La muestra incluyó a tres sujetos con intento de suicidio, mayores de 18 años, que eran atendidos en consulta externa a causa de una lesión autoinfligida en el último año, y a tres psiquiatras que trataban a estos pacientes. La información se obtuvo previo consentimiento informado en entrevistas individuales. Se llevó a cabo un análisis de discurso argumentado para encontrar los significados que los participantes otorgaron a los principios bioéticos y las posibles disyuntivas entre éstos.Las discordancias entre la beneficencia y la autonomía estuvieron relacionadas con el beneficio del tratamiento, el respeto por los valores y las creencias de los pacientes, entre otros. Este trabajo presenta consideraciones éticas relevantes en el escenario clínico, al ofrecer al psiquiatra un análisis bioético que le permita actuar de acuerdo con la beneficencia y respetando la autonomía del paciente frente a casos de intento de suicidio y, de esta forma procurar una mejor atención para ellos.

Ethics, oversight and quality improvement initiatives

BackgroundWhile substantial public and scholarly attention has focused on the ethical review and oversight of quality improvement (QI) initiatives, there are no systematic data regarding the institutional mechanisms currently in...

Unique Ethical Concerns in Clinical Trials Comparing Psychosocial and Psychopharmalogical Interventions

In recent years, there has been a particular emphasis placed on conducting randomized controlled trials (RCTs) that compare the relative efficacy of psychosocial and pharmacological interventions. This article addresses relevant ethical considerations in the conduct of these treatment trials, with a focus on RCTs with children. Ethical concerns, including therapeutic misconception, treatment preference, therapeutic equipoise, structure of treatments, and balancing risks versus benefits, are introduced through a clinical scenario and discussed as they relate to psychotherapy versus medication RCTs. In each case, suggestions are made for researchers seeking to minimize the impact of these ethical concerns on research participants.

Ethical Issues Relating to the Health Effects of Long Working Hours

Considerable research evidence has accumulated indicating that there is an increased likelihood for illness and injury among employees working in long-hour schedules and schedules involving unconventional shift work (e.g., night and evening shifts). In addition, studies show that fatigue-related errors made by employees working in these kind of demanding schedules can have serious and adverse repercussions for public safety. As the result of these concerns, new protective legislation is being advocated in the United States, for instance, to restrict the hours of work among nurses and other health-care professionals. This article reviews the history of concerns about long working hours and the current scientific evidence regarding their effects on workers’ health. The ethical implications of unconventional shift work and long work-hour schedules are considered. Relevant ethical considerations involve mandatory or unpaid overtime and the possibility of employer coercion, the political basis for government regulation of working hours, potential limits on voluntary assumption of risk, societal benefits accruing from the equitable distribution of available working hours, gender-based inequities related to working hours, and employer responsibilities for protecting individuals who are not employees from the spillover effects of demanding work schedules.

Preimplantation Genetic Diagnosis: An Overview of Socio-Ethical and Legal Considerations

Preimplantation genetic diagnosis (PGD) permits the selection of embryos of a particular genotype prior to implantation. As a reproductive technology involving embryo selection, PGD has become associated with considerable controversy. This review examines some of the ethical, legal, and social issues raised by PGD. Relevant ethical considerations include the status of the embryo and the interests and duties of the parents. On a social policy level, considerations of access as well as the impact of this technology on families, women, and physician's duties also warrant consideration. An analysis of these issues in the context of using PGD for selecting embryos unaffected by a serious disorder and for sex selection is presented. We also present a brief survey of PGD-related regulatory schemes in several countries, including the United Kingdom and the United States.

Pulmonary Retransplant for a Patient with Bronchiolitis Obliterans Syndrome and Hepatitis C Viremia: An Ethical Case Analysis

The purpose of this paper is to discuss and analyze the ethical appropriateness of pulmonary retransplantation as a viable treatment option for end-stage bronchiolitis obliterans syndrome, commonly referred to as chronic rejection. Lung transplantation has become a life-saving treatment for patients with advanced lung disease, yet retransplantation not, for reasons not clearly elucidated. Though statistics show comparable survival of retransplant to primary transplant recipients, this is not an option often considered. Through the course of clinical practice, it became evident that retransplantation had many ethical components that were not fully investigated as part of the retransplantation process. This paper is to identify the relevant ethical considerations regarding pulmonary retransplantation.

Receiving Gifts from Clients: Ethical and Therapeutic Issues

The ethical and therapeutic implications of receiving gifts from clients are explored. The importance of the issue is noted, and relevant ethical considerations are discussed. Therapeutic meanings that underlie client gift-giving are explored. By integrating the ethical and therapeutic considerations, four general categories of gifts are identified. Specific therapeutic responses to each category are identified and briefly discussed.